Chong L A, Khalid F, Khoo T B, Teh S H, Kuan G L, Aina Mariana A M, Alias E, Chieng C H, Razali H, Ong G B, Zainah S H, Shukor I N C, Wong J J
Hospis Malaysia, Cheras, Kuala Lumpur, Malaysia.
Universiti Putra Malaysia, Faculty of Medicine and Health Sciences, Selangor, Malaysia.
Med J Malaysia. 2017 Feb;72(1):32-36.
Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services.
An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out.
There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients.
Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative.
对儿童姑息治疗的关注推动了马来西亚各地由儿科医生主导的姑息治疗服务的发展。然而，关于接受医院儿科姑息治疗患者的本地数据匮乏。我们旨在回顾转介至这些服务的患者的临床情况。
对2014年1月1日至12月31日期间在13家医院接受姑息治疗的0至18岁儿童进行了一项观察性研究。
共分析了315例患者，其中新生儿90例（28.6%），青少年46例（14.6%）。所有患者的主要国际疾病分类第十版（ICD - 10）诊断类别被确定为“先天性畸形、变形和染色体异常”117例（37.1%）、“神经系统疾病”76例（24.1%）和“肿瘤”60例（19.0%）。在转诊时，156例（50%）患者进行了全面需求评估。“神经系统疾病”患者的身体需求评估显著高于其他两个诊断类别。大多数知晓自己诊断和预后的患者是患有恶性肿瘤的患者。超过五分之一的转诊患者处于临终入院状态。在144例死亡患者中，111例（77.1%）有晚期护理计划。98例（68.1%）患者进行了丧亲随访。
转诊接受姑息治疗的患者诊断和需求各不相同。为确保所有儿科医生有能力为所有儿童提供优质护理，必须开展进一步的教育和培训举措。
